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Thursday, August 27, 2009

A Rant on Terminology

News Headlines read: Sen. Edward Kennedy loses battle with cancer. Really, he lost? I thought he died from a malignant brain tumor, an “aggressive” brain tumor. The median survival is less than a year for people for his particular tumor. Kennedy was diagnosed in May of 2008. He lived over 15 months after diagnosis. What a loser. He must not have fought hard enough. Huh? I thought he spent most of his life battling for social and health care reform in America. (See Chrissy Kistler’s tribute to Senator Kennedy.)

How many times have we all heard that someone is “a fighter”, “a survivor”? The rest of us must be wusses. How often do we hear of use terminology that is (inadvertently) offensive to an individual or others? If we see advance illness as a ‘battle’, then there IS necessarily a loser. The implication is that we have full control over our disease process and even our survival if we just have the right attitude. This is a dangerous concept and one we shouldn’t perpetuate. There is so much out in the world telling us what we are supposed to do so we don’t get sick, let alone die. And when we do get sick, we are subtlely shunned as having self-created our own suffering. (“Well, she had a type A personality, you know.” “She never ate properly. I told her to eat only organic macrobiotic foods.” Or, one of my personal favorites, “I guess he just gave up.”)

And while I am ranting, I object to using the word “terminal” to describe a person with an end stage illness. We all do it. “My doctor told me I am terminal.” Medicare requires a ‘terminal” diagnosis for admittance into hospice. Isn’t a person diagnosed with Alzheimer’s dementia or Parkinson’s disease ‘terminal”? Is it just me or does ‘terminal’ sound cold, cut-off from options, unfeeling, much like “The Terminator”? We are talking about people here, aren’t we? How about using the term “end stage” when it is medically appropriate? Other ideas?

Here are my three least favorite phrases used in medical/palliative care: (What are yours?)

What about the use of "heroic measures". This takes the battle conceptual framework one step farther. Who wouldn't want to be a hero - fighting bravely against an unrelenting foe in the face of danger and adversity. Sign me up...

@Helen, I couldn't agree more, I hate "There's nothing more we can do."

And, Patrice, I love this post. I am so bothered by the idea that if I were to get metastatic pancreatic cancer or glioblastoma multiforme, and chose to "forgo therapy" that I'm somehow a quitter. Why can't I make a choice in that, why does that make me a failure or weak or "not a fighter." Ach! It's just terrible. I know I don't want to die any time soon, but I also know how I don't want to live. -Chrissy Kistler

Beautifully stated! Although, I will acknowledge that in my practice I find that "allow a natural death" is something that my patients or families can identify with more than "do not resuscitate" or even "palliative care" [big word]. The words my patients choose themselves most commonly are the ones that are the most frank: "Let me go when it's my time to go." There is a simplicity to this statement when my patients tell me this.

Also, the idea that "do not resuscitate" means "do not treat." I see that often on my hospice unit when a patient has a treatable condition that is unrelated to his/her end-of-life illness. Our ED cannot understand why we would want to treat a fractured wrist if "the guy will be dead in a day or two anyway." That really sticks in my craw!

I have always wondered why it is the people with a cancer diagnosis who "fight the battle" or "fought hard to the end". What about those who suffer and die from other causes? We never hear "he lost his battle with cardian disease".I cringe when I hear about a dying patient in our hospital who I am told "is not ready for palliative care"

I will agree with Helen Kao that I sometimes find that "Allow natural death" is something that certain patients and/or families can relate to. In some cases, I've even had patients offer this phrase, saying, "If it's my time, I want to be allowed to go naturally." My hospital does not utilize "AND" orders (we use DNR), but sometimes I find it helpful to use AND in my discussions.

Instead of "terminal," I will often use "life-limiting illness" or even "potentially life-limiting illness" depending on the situation. I use the latter of these two phrases when describing palliative care to others: "I practice medicine focused on pain and symptom management for patients with potentially life-limiting illnesses and assist in communication between doctors, their patients and those patients' loved ones," or something like that. I use this definition when initially introducing myself to patients/families and when speaking to lay people about my job. You know that quizzical look people often give you when you say that you practice palliative care. Always good cocktail party discussion...

I think we need to look inward before we even start to be critical of others using vague or inappropriate terminology. Our use of poetic license is no more or less than any other field in medicine. I freely admit I have used “allow a natural death” many times; however the more I think about this phrase the less I like it. First, I have never seen an unnatural death (I’m not even sure what it is – corners use the term for accidents, executions, homicides, suicides, and the like; I doubt that is what we are trying to convey when we use the term.) What I have seen are plenty of people being kept alive artificially, and I agree that one can argue that this may be an unnatural life. But an unnatural death, no. Death is what it is, the irreversible cessation of life.

Yes, patients may understand it better than some other terms that we have, but the same can go for many of the terms mentioned above. What this phrase does convey though is arrogance from the medical field that we have some power over death. It is no longer in our purview to prolong someone’s life, but now we have taken over the world of the dead. This is most evident by the use of the phrase “if you were to die, would you like us to try to bring you back using medical interventions like CPR.” Really? We can do that?

I agree that using "battle" as a metaphor for a patient's experience with a terminal illness is less than ideal. I didn't know that Ted Kennedy was a major proponent of the "war on cancer," so indirectly (and presumably unintentionally), he contributed to this mentality. (See here.)

The metaphor lives on as evidenced by some of the physicians quoted in the article- see especially Dr. Henry Friedman who states that “If you go to the Internet and do a search on outcomes in glioma, everyone will call it a terminal illness,” he said, referring to the class of brain tumors that include glioblastomas. “Your outcome is ‘dead on diagnosis.’ If you don’t have the philosophy that you can win, you have lost before you started.”

In other words, don't acknowledge that it's a terminal illness....if you don't, you might live a few months or years (if you're really lucky) longer, and that is "winning." Certainly, I'd never fault anyone for seeking aggressive attempts at life-prolongation, but many might prefer to define "winning" and "losing" a little differently...

Great post. I agree that the media's emphasis on "fighting cancer" and all the books and stories out there about people who fought and "willed" themselves free from cancer make those who are dying feel responsible, and somehow mentally weaker. To put that burden of guilt on top of everything else a cancer patient is dealing with is ridiculous. I'm glad others are addressing this issue, and I hope it gets out to the media to stop using these damaging words (unintentional though it may be).

Paul, yes and thank you for the reminder. I have often wondered who we are trying to console when we say 'she died peacefully". Even if the actual minutes to hours before the death appeared 'peaceful' to us, how do we really know? And yet I am 'guilty' of saying this as well.

Great discussion. I fully agree that words matter. We keep talking about allowing patients to "be in control" but what that ends up meaning is again, shifting responsibility to the patient and family who may or may not want to take on this role. The other term that really bothers me is "he/she failed the treatment". What or who "failed" who? We are again shifting responsibility for lack of effect to the patient. Finding the best words to use is not easy but I think it does help to have these discussions to see how these terms are received by others and what they mean. Meg

Yes, we accused him of having chest pain but he denied it. All his fault if we miss the MI.

Seriously, I think both of those locutions illustrate the way we hold patients responsible for their own illnesses and for the limitations of our ability.

Things I like: I actually use "allow a natural death" for many of the reasons that Lynn explained. I also use "life-limiting illness", same reasons. I don't like "terminal". Who was it who said "life is a terminal illness"? I say "disease-directed therapy" instead of "aggressive care", although I often adjust or translate it for patients and families.

1. I think that the words we use are dependent on the person giving them (training, experience, mentorship etc.). I find that we can say most anything as long as you are sincere and compassionate. Patients and families pick up on your "heart" language more than what "exact" words you actually use.2. I like "Allow Natural Death", because it contrasts all the technology that gets in the way of natural death (allowing the BP to drop, allowing people to stop breathing when they stop breathing etc). I guess to me "AND" is what happens when I take care of people on hospice who choose this route instead of dying on a vent for example. 3. Our Palliative Care Team is trying to "unofficially" change "Terminal Extubation" to "Compassionate Extubation." 4. To me patients that choose to stop chemo when it's not working and choose hospice care are braver than those who continue with what they are familiar with. I had a patient who was a Psychologist and admitted that she couldn't get over the mental block of "stopping chemo" and that continuation of chemo was comforting and familiar even though she felt it was causing her to decline faster!?!5. I hate the phrase "It's not that time yet" uttered by doctors who don't understand Palliative Care when the nurses recommend a PC consult. 6. "Your heart and lungs sound good" has got to rank up at the top of what doctors say to patients and families when all hell is breaking lose physically and the family is looking for some "hope."7. "Don't talk about hospice because they will get depressed and lose the will to live," told to me by not just families (expected) but by other DOCTORS!!!...I'm done ranting, I could probably do this all day long!!!

Great comments by all. We are stifled in our attempts to establish goals of care by the physicians who don't address "palliative" because then the patient would "lose hope."I would like to see this discussion occur before admission into the Palliatve Care program. As it is now, we see patients whose docs keep telling them "we can try another chemo agent." Then the Palliative Team turns up on the doorstep saying, what do you mean, you want "all lifesaving measures." Who would you believe, the doc you know and trust, or a stranger saying you are going to die.

(I promise Drew and I will not always come by and post Pallimed posts, but if we can interconnect resources that is a good thing and we don't waste space restating/cutting/pasting our arguments here. Also I have reciprocated a links back to this article from Drew's post and my post.)

Christian: we more than welcome the links. The great thing about the palliative care community on the web is that there is such a great wealth of information already out there. Although, it is sometimes difficult to find good sources unless we have these links.

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